JRA Children's Fiction

I came across a reference to a fiction book by popular Australian author Colin Thiele (anyone remember Storm Boy from school??) on one of the Australian Arthritis support websites.  I can't remember what the website was, though I was prompted to find a copy of the book somewhere.  It is called Jodie's Journey and it looks to be out of print.  I found it at a second hand online bookstore called Brotherhood Books but it looks like I got the last copy.  There is still a couple of copies over at Amazon: JODIE'S JOURNEY (McVitty Signature Paperbacks) though one is a little pricey.  If anyone is keen to read it, send me a message, I'd be happy to send it on.

It's what I'd call a short story or maybe even a novella (112 pages) and was actually a little difficult for me to read.  I'm not sure how much of the treatment would have changed since 1988 when the book was written with the introduction of the newer biological DMARD's perhaps now used in preference to older ones such as gold injections, and maybe now as a first choice.  That aside it is a reasonable account of diagnosis and day to day difficulties even though it is somewhat condensed.  This is most likely due to the target audience.

The reason that it was a hard read for me was how much I related to within the story.  I never saved the day or had an affinity for horses, though the a lot of the rest was a little close to the truth for me to be comfortable with.  There were also a couple of major differences in how the main character Jodie deals with her condition and how I felt in the same situation.  I'm not sure this is enough to question the authenticity of the character as every journey is different, however, I do wonder if this is a reflection of an adult's perception of a similar situation or maybe just my own childhood affecting my perception of the situation.    I'll get to the examples shortly.  All in all, it's not a bad read though I don't know that I'd necessarily recommend it to a kid going through this now.   The story was written after Colin received a letter from a fan of his work asking him to write a story about a girl with arthritis as her friends didn't understand what she was going through and she thought Colin would having suffered with RA for many years, spending much of his hospital time writing his other books.

In the beginning of the story, you need to know that 'tinny' means lucky.  Apparently this is Australian slang that I wasn't even aware of.  I gathered it from the context of the sentences - though it was weird enough that I remembered enough to comment.  The rest of the language is probably at about a fourth grade level.

I have a couple of comments to make about how I relate or didn't relate to the story and will expand further at a later date as this few years of my life actually needs more than a single post to share.

• Like Jodie, I'm not sure what was more difficult, the pre-diagnosis period where you are criticised as putting it on or making something more of it than it actually is or the difficulty of the realisation that 'you can't' do something that you could before, or that you perceive is something that normal people can do.

• An interesting point was made about the cost of alternative treatments like acupuncture.  This wasn't something that was suggested to me in those days, though I do relate to the sentiment.  The best treatment isn't always one that is available to the masses.  An example is the physio treatment that I receive now and have been for almost a decade.  It has made an enormous difference to my quality of life and I would certainly recommend to anyone and it upsets me that the quality of care and types of care available to people is directly proportionate to what they are able to afford.  How could I condemn someone to the last decade of my life without that treatment?   (This rant will be continued in another post)

• As an extension to this and back to some of the points made in the story, the whole part about getting a wheelchair wasn't as easy as all that in real life either.  I was unable to walk unassisted for quite some time and medicare didn't cover this - especially not an electric one...  I was a year later in '89 so not too much would have changed.  This was something that we had to jump through hoops for and I eventually did get one which replaced the second hand one that my parents had purchased.  It didn't allow for too much more freedom though as I still needed to be pushed (like a baby really) and didn't obtain the independence that I desperately craved at twelve.

• Explaining to strangers is always difficult.  I think it was easier not to get into it really. 

• The big differences relate to how Jodie reacts to the commentary about her condition.  In the beginning our reactions were similar, hurt and a little pissed at being called 'hopalong' or slow and clumsy.  She seems to be ok with the awkwardness and lack of ability to do certain things provided that no-one sees it happen.  I was the reverse, the public image seemed to embolden me.  It's ok to be lazy, or I don't want to do that and disregarding it somewhat haughtily.  In private, sitting there looking at your shoes for example, being unable to do up the laces simply because I couldn't reach them can be a soul destroying moment that isn't too easy to walk away from.  It's easy to get into the spiral where you aren't good enough and  obviously you are completely useless because guess what you can't even do up your own shoes.

• Jodie also seems to get used to the 'hopalong' comment which I never did.  The intent isn't usually malicious, though it always seemed to be making an obvious point about my failing to be able to walk properly.  It stung.  I'd put it on par with someone calling you fat.  It might be true, but it doesn't make it a nice thing to hear.

I'm not claiming to be an expert here on anything other than what happened in my own life and how I perceived it at the time and now.  One thing that is illustrated and so very true is about those difficult people that know everything about you and your condition including:  curing it (why haven't you tried this sooner, seriously), that it isn't that bad a disease (my gran has it and she still walks to bingo and weeds the garden and she's 70, what's your problem), it's an old person's disease (kids don't get arthritis, you are making it up) and just what you should do about it (insert many millions of bizarre remedies here that no one they know has even - several hundred of which I thought what the hell, tried them and they didn't do squat).  It annoys me when the advice comes from the well-meaning (and not so well-meaning but arrogant know-it-alls) clueless dolts who are the self claimed experts.

I value quality information and discussions with those who have it.  I don't like dealing with the preacher types that seem to feel that they know better than I do about what I feel, think and do.  Hell, I might be wrong about the best treatment, or the best anything, but come on, I do know what it actually feels like and how I feel about it!

To be continued...

Still's Disease, JRA, JIA or whatever they want to call it today...

I went looking for some information about the condition I was diagnosed with over two decades ago.  Given that I couldn't find too many personal stories online, I went looking for information in relation to the actual condition to see how common it actually was.  Since I'm not enrolled at uni this semester, my access to journal articles has disappeared and I am reliant on information freely available online, so it may not be entirely timely or accurate.   The name has changed according to Arthritis Foundation in Queensland to JIA (Juvenile Idiopathic Arthritis), basically meaning arthritis of unknown origin.  What it is, is still the same and is an umbrella for a number of different types of juvenile arthritis.  Apparently some of what I have are quite common (JIA affects 1:1000 children according to the Arthritis Foundation), other parts not so much.

According to Arthritis.Org, Systemic Onset JA (otherwise known as Still's Disease) is the least common form of juvenile arthritis.  The Royal Childrens Hospital's Rheumatology department bundles systemic onset with other types that affect less than 10% of cases.  In half the cases diagnosed, symptoms disappear between 1 and 3 years leaving no lasting joint damage.  What isn't really clear is what 'lasting joint damage' you are left with when the year is over and the fevers and the rash disappear and you are in the other 50%.   For me, most of the damage that was done happened in that first year or so has been the cause of most of the ongoing pain.  On both sides, the hips are bone on bone with no joint spacing.  I'm not sure when the protusio occurred - it shows up in 2002 x-rays.  I don't have any before that and I don't remember any further back than that.

The first symptom was intermittent pain in my hips that caused a limp.  The limp changed sides over the first few days and looked a lot like a twelve year old trying to get out of something that she didn't want to do or maybe even 'growing pains'.  Unfortunately that isn't what it was and the fevers, nausea started and more joints were becoming painful, warm and swollen.   I was hospitalised within a fortnight of the first symptoms and remained in hospital for six weeks.  During that time I met one other kid with arthritis.  He was a lot younger than me and had it since he was two or three and I didn't really talk to him that much.  Mostly our mum's chatted and even that was only briefly when they saw each other when we had appointments with physios, doctors, occupational therapists that overlapped.  That was it.  I felt like I was on my own with this.   I will share more about the next twelve months and around the time around the diagnosis.  It won't probably be until after the surgery.

After twelve months, I improved dramatically and flare-ups were reasonably rare.  I was no longer reliant on a wheelchair and could walk reasonable distances.  I was never going to be a runner but there was little I didn't do that I wanted to when I left high school and for the next few years.  At some level, I had convinced myself that I didn't want to do the things that I couldn't.  Things started to turn again and the list of things that I didn't want to do increased.  When I was in group situations, it was easier to say that I was too lazy to participate.  It seems to be more socially acceptable to be lazy, than physically incapable of doing something.  Less questions are asked and no pity offered, so lazy it was.

The pain only occurs when I do too much.  So I became reasonably good at judging what was too much and stopping just shy of that.  I got it wrong sometimes.  I rested, the next day I took it a bit easier.  The list with what I couldn't do was getting longer and recovery time from overdoing it is becoming longer and longer.  The efforts that I have made to try to maintain the range of movement in my hips and maintain my quality of life could probably work for a little while longer, though what I want from my life has changed somewhat too.  If you had asked me a few years ago, I would have told you that there would be no way that I would be looking at surgical options now.  That was always something for down the track.

Introduction

The decision to have bilateral hip replacement surgery has taken a little while to come to and has been a consideration for me for some time.  It will take me a number of posts to cover the things that I considered before booking the surgery as well as what I have done since in preparation.  I hope to chronicle the journey from now through rehabilitation and living with new hips in the hope that this information is useful to someone else out there who is in the same situation as I am.

I have done a lot of google searching looking for not only information about the procedure itself, but also the stories of people that have had hip replacements. Of most interest to me are the accounts of women of child bearing age who haven't had children yet and are looking to do so at some point in the future (or maybe have since their op).  I was also interested in hearing the stories of women who have severe hip joint problems primarily caused by arthritis (rheumatoid or other).  Having grown up with a chronic illness that I really didn't want to talk about as a child or even as an adult, it didn't really surprise me that there weren't a lot of personal accounts online.  Thought I don't know what I really expected to find, it certainly was more than what was out there.  I would still love to hear from you and your story if you have been through this, or thinking about going through this.

The story as I tell it here will probably be a little disjointed as a lot has happened leading up to this point which is needed to understand some of how I ended up at this point.  In between the day-to-days activities that are going on in the lead up to and post surgery, I'll do my best to explain the history.

Lori